We made it home safely! Ahh, there is no place like it!
This trip really was an emotional event for us all. It took all our courage to head up there with hope that it would pan out into a positive result. We knew the testing would be hard on Lucy and that we could very well end up with nothing out of it. It was a risk that we waited to take until we had no options left. Our doctors here at home had given up on trying anything new and were slowly letting Lucy's quality of life worsen. When we checked in a the hospital Lucy had lost a pound since her last weigh in- now at roughly 27.5 lbs at 4 and 1/2 years old.
I cannot even explain how amazing this hospital was. It was beautiful, clean, and as modern as it gets. The lobby was practically art. They truly thought of everything when it came to service and comfort at this hospital. EVERY staff member- from the janitor to the doctors- was warm, welcoming, and comforting. Even the food was incredible. I wish we could visit a hosptial like that every time we needed to be seen. The meaning of healthCARE is truly meant there.
The rollercoaster really began after Lucy came out of surgery when her NG tube was placed and we were checked into our motility testing room. Lucy lay in bed crying that she wanted to "be free" from her tubes and wires. Dr. D came in the room and explained that after a quick review of all her information that he was not hopeful he had anything to offer us, that he felt unsure we would find a motility issue here. It was devastating to hear that so early on after we had traveled so far. It was all we could do to not cry and run home.
But as the testing continued our nurses encouraged us and lifted us up. They cheered with joy beside us watching Lucy eat. They cared and tried to hint as best they could that they could see something not right on the monitor because they knew we were worried. After we were finished our testing and were admitted to our room, the next day one of the nurses came upstairs just to see us again before we left.
By the time we got to meet with Dr. D for Lucy's results we were so nervous. We had spent the night praying and hoping that there would be something for us to walk away with from all of this. We tried to tell ourselves we would be okay if we got nothing more than information that eliminated yet another possible diagnosis.
But when Dr. D walked in the room, he flopped down in the chair in front of us and jokingly said, "Your doctor is much smarter than I am, he has proved me wrong. Lucy does have a motility disorder." To hear something like that so openly from a man who is truly as brilliant as Dr. D was laughable. After that he ran through a matter of fact plan, with all the optimism in the world. We were practically speechless.
I know better than to count my chickens before they have hatched. I haven't clicked my heels and jumped for joy that our problems are solved. I know this is a long process that probably won't be nearly as uncomplicated as it sounds, but I AM relieved. I am pleased we are finally moving forward to improve life once again after being hopeless for so long.
A trip all that way was absolutely worth it just for that.
Saturday, May 14, 2011
Friday, May 13, 2011
Ohio Day 2 and 3
Yesterday morning Lucy underwent a Gastric Emptying Scan. Basically its a series of scans done to time how long it takes the stomach to empty after eating. Afterwards Dr. D reviewed all our test results and came up to speak with us before being discharged.
All of Lucy's testing revealed that she does have a motility disorder. Both her small intestine and stomach had few, weak, and sporadic contractions. However, Dr. D truly felt there were quite a few treatments worth trying in order to significantly improve her functioning and even possibly get some food into her diet. He also said that we can most certainly treat her pain with a medication called Elavil.
All of the information and treatments that Dr. D recommends will be faxed on to our GI at home so that Dr. G can put these plans into action.
There are absolutely no quick fixes here, however, there is absolutely a hope that things WILL get better. There is a plan now so that we can start moving forward. I cannot wait to get home and begin working with our GI, Dr. G!!
Today we spent the day exploring the city and spent HOURS at the local science center. It was amazing and Lucy had a blast! Tomorrow we head home!
Wednesday, May 11, 2011
Ohio Day 1
We made it here safely late yesterday! After some much needed down time with family after a long long long drive, we sacked out and got up to report to the hospital at 6am this morning.
This hospital is amazing. Its beautiful with an incredibly supportive staff who clearly care a great deal about their patients.
It has been an exhausting day! Lucy was sedated in the OR so they could place a nasal tube with a catheter snaked to her small intestine. She was then sent up to the motility clinic to be monitored all day long. We have no idea what her test results have yielded yet.
We briefly met with the head doctor here whose immediate assessment was that IF motility is our problem, its not our only problem. As a matter of fact his first intuition was to ask if we had heard of a Mitochondrial disorder or if we had been tested for it as of yet. Interesting.
The day was hard on Lucy and emotionally draining for Zach and I. There are so many details that I could share but can't at the moment.
I had to post so that I could share with everyone that Lucy was given a FULL meal for the first time in her entire life! She was given a menu to select from and permission to eat whatever she liked. Lucy picked a hot dog, tater tots with ketchup, a chocolate cupcake, apple juice, animal cookies, and scrambled eggs.
She devoured it and we all watched grinning from ear to ear. She was so happy! She LOVED the animal cookies and tater tots. She didn't like the apple juice, hot dog, or ketchup. I've always wondered what Lu would eat if given the choice. We snapped away with pictures like the paparazzi!!
Tomorrow we have another test scheduled and then a meeting with the big doc here. We are still hopeful he will be able to help us.
I hope to update again soon now that we are settled in a room for the night! Thank you all so much for your prayers, messages, calls, texts, and emails of support!! Not one has gone unappreciated during this incredibly emotional time!
This hospital is amazing. Its beautiful with an incredibly supportive staff who clearly care a great deal about their patients.
It has been an exhausting day! Lucy was sedated in the OR so they could place a nasal tube with a catheter snaked to her small intestine. She was then sent up to the motility clinic to be monitored all day long. We have no idea what her test results have yielded yet.
We briefly met with the head doctor here whose immediate assessment was that IF motility is our problem, its not our only problem. As a matter of fact his first intuition was to ask if we had heard of a Mitochondrial disorder or if we had been tested for it as of yet. Interesting.
The day was hard on Lucy and emotionally draining for Zach and I. There are so many details that I could share but can't at the moment.
I had to post so that I could share with everyone that Lucy was given a FULL meal for the first time in her entire life! She was given a menu to select from and permission to eat whatever she liked. Lucy picked a hot dog, tater tots with ketchup, a chocolate cupcake, apple juice, animal cookies, and scrambled eggs.
She devoured it and we all watched grinning from ear to ear. She was so happy! She LOVED the animal cookies and tater tots. She didn't like the apple juice, hot dog, or ketchup. I've always wondered what Lu would eat if given the choice. We snapped away with pictures like the paparazzi!!
I hope to update again soon now that we are settled in a room for the night! Thank you all so much for your prayers, messages, calls, texts, and emails of support!! Not one has gone unappreciated during this incredibly emotional time!
Saturday, May 7, 2011
Wednesday, May 4, 2011
Ta-dah!!
We are finally free from our old, incapable DME (medical equipment supplier)!!! Finally!!! In case you missed it, I whined about it HERE . After weeks of phone calls back and forth, back and forth, between the old DME, new DME, and our GI's office, we have finally met with success!
Her new pump, formula, bags, tube supplies, and IV pole have all already arrived. All thats left now is to have the old DME come out and pick up their pump and pole!
Success feels so good!
Her new pump, formula, bags, tube supplies, and IV pole have all already arrived. All thats left now is to have the old DME come out and pick up their pump and pole!
Success feels so good!
Sunday, May 1, 2011
Things here are moving along! Sorry for such a delay in posting, I just haven't had anything exciting to report!
We leave for Ohio soon and we are so excited! We are thrilled to visit with family and are eager to see if we can get some answers for Lucy from the docs there.
We took the kids to the local conservancy yesterday. It was a perfect day- cool, sunny. The kids got to learn about honey bees, release some tad poles into a stream, take a hike through the woods, and check out a really cool barred owl. It turned out to be a lot of fun and very educational!
Zachary ran and explored everywhere but Lucy was mostly carried. Lucy's energy levels certainly haven't improved here lately, among other things. Something has certainly changed in her motility- going from some explosive episodes last week, to not going at all for a few days, to ending up back in pull-ups, and now needing over a full capful of mirilax just to go. (just in case you wanted to know! lol!) I have no idea what has changed but I don't like it.
Thats all there is to report here! Just counting down the days and praying we get some sort of answers.
Thank you so much for checking in on Lucy!!
We leave for Ohio soon and we are so excited! We are thrilled to visit with family and are eager to see if we can get some answers for Lucy from the docs there.
We took the kids to the local conservancy yesterday. It was a perfect day- cool, sunny. The kids got to learn about honey bees, release some tad poles into a stream, take a hike through the woods, and check out a really cool barred owl. It turned out to be a lot of fun and very educational!
Zachary ran and explored everywhere but Lucy was mostly carried. Lucy's energy levels certainly haven't improved here lately, among other things. Something has certainly changed in her motility- going from some explosive episodes last week, to not going at all for a few days, to ending up back in pull-ups, and now needing over a full capful of mirilax just to go. (just in case you wanted to know! lol!) I have no idea what has changed but I don't like it.
Thats all there is to report here! Just counting down the days and praying we get some sort of answers.
Thank you so much for checking in on Lucy!!
Monday, April 25, 2011
Happy Easter!
We had Easter baskets in the morning- each kiddo got a DVD, some art, some books, and a toy. Then we went to my parents for our yearly Easter egg hunt. We also made crosses out of clay and decorated them with beads. The kids loved it!
Lucy was super tired all day though and really just didn't seem to feel well. I don't know if it was too hot out for her or what. Don't let the smile she has in her pictures above scare you, she doesn't normally smile like that! It was her fake, "Get out of my face I want to be left alone" smile. Hahaha! She seems to be doing a bit better today, so hopefully she was just exhausted yesterday.
I hope you all had a great Easter too! Thank you for checking on Lucy!
Saturday, April 16, 2011
Updates
There are a few things I should probably update on, if you're a regular around the Short People blog:
We still haven't been able to switch Lucy's DME supplier. I've been back and forth, back and forth, day in and day out trying to getting all the loose ends tied up so that we make the change over and it just isn't happening. The GI's office has yet to fax over the prescriptions despite my weekly phone calls for almost a month now. Ugh. I am about to give up. On the plus side, the lousy DME that can't seem to do anything right sent me a 175$ check for what I don't know. I'll take it!
The antibiotics that Dr. G prescribed for Lucy's small intestine bacterial overgrowth are a no go with the insurance company. They refuse to cover it so I am not sure where to go at the point with it- argue it or wait until we visit Ohio for a second opinion.
Things are coming together for our trip to Ohio in May. We are super lucky enough to have family up there to visit with, which makes the trip all that much more exciting. I am very nervous about the whole thing, since the testing can be very hard on a child and can often yield inconclusive results, but we are moving full steam ahead and praying for answers from the nation's expert.
And in non-medical, family news- Zachary was awarded his yellow belt in TaeKwonDo last week! We are so proud of him!! I love seeing my little guy beam with pride like that!
Thank you for checking in on us!
We still haven't been able to switch Lucy's DME supplier. I've been back and forth, back and forth, day in and day out trying to getting all the loose ends tied up so that we make the change over and it just isn't happening. The GI's office has yet to fax over the prescriptions despite my weekly phone calls for almost a month now. Ugh. I am about to give up. On the plus side, the lousy DME that can't seem to do anything right sent me a 175$ check for what I don't know. I'll take it!
The antibiotics that Dr. G prescribed for Lucy's small intestine bacterial overgrowth are a no go with the insurance company. They refuse to cover it so I am not sure where to go at the point with it- argue it or wait until we visit Ohio for a second opinion.
Things are coming together for our trip to Ohio in May. We are super lucky enough to have family up there to visit with, which makes the trip all that much more exciting. I am very nervous about the whole thing, since the testing can be very hard on a child and can often yield inconclusive results, but we are moving full steam ahead and praying for answers from the nation's expert.
And in non-medical, family news- Zachary was awarded his yellow belt in TaeKwonDo last week! We are so proud of him!! I love seeing my little guy beam with pride like that!
Thank you for checking in on us!
Wednesday, April 13, 2011
This is Life
Life is back to normal after my getaway this weekend. I'm the full time nurse, driver, chef, maid, teacher, counselor, referee- AKA, The Mom. I'm happy to be back, I felt practically naked without my babies in tow. I do miss that peace and quiet though.
Lucy continues her vigilant stakeout of the kitchen and has seized multiple opportunities this week to steal food. So shes stuck with a case of the cramps, bloating, nausea, and diarrhea. This leaves her in a bad mood. Actually, bad isn't a strong enough word for it. Food actually seems to turn Lucy into the she-monster from hell. She actually tried to bite me! Can you believe that?
Its tantrum city around here in between snuggles on the couch. It can be a bit much to deal with while Big Zach has been working 12+ hour days most of the time. I'm usually a pretty patient person that doesn't often yell but today I actually found myself shouting, "Great! Now look! You're making me yell! Would you just stop it!!??" Seriously, I don't want to turn into one of those parents that everybody is staring at in public because she's clearly lost her mind on one too many errand runs with the kids, but good grief I can only take so many senseless fits from a 4 year old before I am forced to yell. I'm kidding.....but I'm not.
Parenting a child with a complex and unusual medical condition has certainly begun to develop itself into a conundrum. Dealing with a normal snarky, snippy, stubborn 4 year old is a challenge for any parent at times, but throw a rare medical complication into the mix and things get extra spicey. At one moment today I found myself almost laughing wondering if it were she or I who was acting like she'd lost her mind.
I know she is acting out because she doesn't feel well and just doesn't know how to deal with it. She's starting to get angry, jealous, and resentful that the rest of us can eat what she now knows is some tasty stuff. Also, because her feed rate cannot be increased due to her extremely slow moving small intestine, her body is probably telling her that she needs to eat. She steals to satisfy her cravings and I cannot even begin to imagine how to live a life without food. I feel the utmost compassion for her reality. I live everyday wishing things were different for her and advocating so she can get treatment that will hopefully get her there.
After that, all I can do is continue to encourage Lucy to stay positive about her life, to fight for each day, to talk to us when shes upset, and to enjoy the good things that she does have in her life. I need to maintain calm discipline and take each day as it comes just as I would with any 4 year old. Oh, and I also need to spend this weekend at Lowes looking for some heavy duty locks for the garbage can, fridge, pantry, and dog food pail. :)
Lucy continues her vigilant stakeout of the kitchen and has seized multiple opportunities this week to steal food. So shes stuck with a case of the cramps, bloating, nausea, and diarrhea. This leaves her in a bad mood. Actually, bad isn't a strong enough word for it. Food actually seems to turn Lucy into the she-monster from hell. She actually tried to bite me! Can you believe that?
Its tantrum city around here in between snuggles on the couch. It can be a bit much to deal with while Big Zach has been working 12+ hour days most of the time. I'm usually a pretty patient person that doesn't often yell but today I actually found myself shouting, "Great! Now look! You're making me yell! Would you just stop it!!??" Seriously, I don't want to turn into one of those parents that everybody is staring at in public because she's clearly lost her mind on one too many errand runs with the kids, but good grief I can only take so many senseless fits from a 4 year old before I am forced to yell. I'm kidding.....but I'm not.
Parenting a child with a complex and unusual medical condition has certainly begun to develop itself into a conundrum. Dealing with a normal snarky, snippy, stubborn 4 year old is a challenge for any parent at times, but throw a rare medical complication into the mix and things get extra spicey. At one moment today I found myself almost laughing wondering if it were she or I who was acting like she'd lost her mind.
I know she is acting out because she doesn't feel well and just doesn't know how to deal with it. She's starting to get angry, jealous, and resentful that the rest of us can eat what she now knows is some tasty stuff. Also, because her feed rate cannot be increased due to her extremely slow moving small intestine, her body is probably telling her that she needs to eat. She steals to satisfy her cravings and I cannot even begin to imagine how to live a life without food. I feel the utmost compassion for her reality. I live everyday wishing things were different for her and advocating so she can get treatment that will hopefully get her there.
After that, all I can do is continue to encourage Lucy to stay positive about her life, to fight for each day, to talk to us when shes upset, and to enjoy the good things that she does have in her life. I need to maintain calm discipline and take each day as it comes just as I would with any 4 year old. Oh, and I also need to spend this weekend at Lowes looking for some heavy duty locks for the garbage can, fridge, pantry, and dog food pail. :)
Sunday, April 10, 2011
Weekend
Over the weekend I made an escape for the beach with my oldest friend. I left Lucy overnight for the first time ever! Big Zach spent the entire weekend alone with the kids while I took off for the weekend to relax and restore just a bit.
I will admit, I was nervous and feeling guilty at first. It took me a while to let myself go and just enjoy the trip. I am so glad I did it. I feel so much better. My bestie took good care of me thats for sure! I can't thank her enough!
The kids did just fine without me. Nobody died, got sick, or hurt. Nobody is disappointed I left. Tomorrow will be an easier day after a weekend of rest, for both me and the kids and I can't wait to start it.
I will admit, I was nervous and feeling guilty at first. It took me a while to let myself go and just enjoy the trip. I am so glad I did it. I feel so much better. My bestie took good care of me thats for sure! I can't thank her enough!
The kids did just fine without me. Nobody died, got sick, or hurt. Nobody is disappointed I left. Tomorrow will be an easier day after a weekend of rest, for both me and the kids and I can't wait to start it.
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